CIDP Exacerbation

    • Anonymous
      March 15, 2012 at 3:31 am

      I have had GBS/CIDP since Sept of ’06. My wife had great insurance with her job. She was laid off last December with 1500 others from Lockheed Martin….and there went our insurance coverage. COBRA was not an option because of the cost. I am currently experiencing an exacerbation. I usually end up with paralysis from the waist down. I am open to any words of advice, direction, encouragment, or prayer. needless to say, I am more than a little nervous. So…any advice!

    • March 15, 2012 at 3:35 am

      wow, I am so sorry! Can you qualify for Medicare/disability/some sort of emergency assistance. Maybe contact the infusion center/hospital/ or IVIG companies to see what they can do ? Steroids are cheap usually, have you had success with those? Surely there has to be some sort of assistance in place for situations like these. I am so sorry yall are going through this. The healthcare/insurance issues is such a stressful one, with IVIG being SOOO expensive! My thoughts and prayers are with you!

    • March 15, 2012 at 1:54 pm

      You mention gbs/cidp dx. Is it cidp? If so, and no insurance for ivig, is it possible to go to old doc for office visit and explain insurance issue and ask for prednisone? Although not a first choice long term solution, it might be the best most economical. What about any clinics inarea? Bring all info so docs know cidp dx and explain situation and ask for prednisone. (pennies on the dollar compared to ovog) Last, what product did you use, were you signed up with their programs. Gammunex and gammaguard both have a program for this exact situation. Not sure if they will retroactive the amount of ivig used and count it towards the program worth a try saying a prayer for you.

    • Anonymous
      March 16, 2012 at 10:35 pm

      check out the ivig manufacturer’s policy. I just read in one of the many forums I am on that for every four had ordered in the past they might comp you 1. Now the challenge will be finding a nurse who will give it to you. I have been the recipient of the drug company’s policy to cover those patients who have run out of insurance – or whose insurance won’t cover it. Last time I used it, I got 6 weeks of medicine (daily infusions).
      Try everything and don’t give up –

    • Anonymous
      March 16, 2012 at 10:40 pm

      this was from the other strand in this forum:

      I don’t know if this is old news or not but I recently learned of a certificate program offered by the makers
      of gamunex that offers credit for a months treatment for every 4
      months you use it in the event that you loose insurance coverage.
      It’s only available in the event of loss of insurance coverage.
      Here is the link to their site for you to investigate :